Tag Archives: Special Needs

A few years back, there was a flash blog event that had autistic bloggers all finish the sentence “Autistic people should …”. I think the reason was to counter the hurtful search suggestions that Google made when people typed in “autistic people should”. I was reminded of this event when I read this weeks #theprompt, which is “should”.

I was also reminded of my own preconceived ideas about what disabled people should. A few days ago, I wrote to a disability support group on Facebook about feeling like I was setting a bad example for the disability community because I don’t work and spent years in an instituton. Shouldn’t I have to explain why I can’t work or live fully independently? The short answer is: no.

I was feeling like I should have a disability label to justify my every need because of what I learned whilst being part of E-mail groups run by the National Federation of the Blind, one of the two major organizations of the blind in the United States. This was in the early 2000s, mostly before I’d been diagnosed with autism. What I learned was that blind people, unless they have severe additional disabilities, which I’ll address later, should be able to achieve as much as sighted people do. For example, we should be able to read at the same speed, get around with a white cane completely independently, go to college (I think I picked up the term “college-bound” there), be employable, etc. I can’t do or be any of these things. Keeping the bar of expectations high was the motto of the parents’ organization of the NFB or so it seemed. I always imagined a candy bar put up on a star light years away and me being told to reach for the stars.

Sometimes, when people judged blind children or adults they only knew through newspaper articles not to be independent enough, someone would come up with the get-out-of-jail-free pass: “Maybe the person has additional disabilities?” This is a real possibility, since strangers usualy assume my every impairment is due to blindness despite my additional disabilities, so I assume newspaper reporters are no different. Yet does it matter? Should it? Apparently, sometimes.

In an old (like, late 1990s) issue of Future Reflections, the NFB’s magazine for parents of blind children, a blind adult reported his shame when he crticized parents of blind teenagers for not taking their teens to a seminar on independence. It turned out he was speaking to a roomful of parents of teens with multiple disabilities, so obviously they couldn’t bring their teens. I assume most of these teens had the type of disability that seems to have a monopoly on the term “multiple disabilities” when additional disabilities are involved: severe intellectual disability. After all, when I played the additional disabilities card after my autism diagnosis in 2007, I was told to look up Temple Grandin.

I may sound bitter and I shouldn’t be. After all, I do get the services I need now, even though they cater to, well, people with severe intellectual disabilities. That being said, I know I’m incredibly privileged now to have found my particular care agency, because most others would try to fit me into the mentally ill mold or the blindness mold or any other not-completely-fitting mold rather than looking at my needs.

This all brings me to my point, which is that blind people, autistic people, any kind of disabled people, any kind of people in fact, should not have to justify their needs. We are all human and all different, after all.

Today I discovered the #SEND30DayChallenge, a 30-day special needs and disabilities blogging challenge. I have participated in way too many 30-day challenges and there’s not one I’ve finished. However, they’re usually just meant to inspire people to write about certain topics. Most people I know don’t follow these challenges over 30 consecutive days.

The first topic in the #SEND30DayChallenge is “the meaning beheind your blog name”. I have a pretty self-explanatory blog name, so I’m not writing about this. Instead, I’m going with the day 2 topic, which is “10 things you don’t know about ___”. Here are ten things you may not know about my disability expierence.

1. I am multiply-disabled. One common myth about multiple disabilities is that the term should refer only to those with an intellectual disability combined with a mobility impairment. I do have a slight mobility impairment, but I don’t have an intellectual disability. However, I am multiply-disabled nonetheless. I am, after all, blind and autistic and mentally ill and have some other difficulties.

2. I struggle with seemingly easy things while I find seemingly diffcult things easy. For example, I can work a computer but not put peeanut butter n a slice of bread. Similarly, due to the variability in my energy level, executive functioning and mental health, I can do some things one day but not the next.

3. You cannot always tell why I have a certain difficulty. Neither can I. This is hard, because people often want to categorize and label things that are out of the ordinary.

4. I have difficulty with communication sometimes. I don’t just mean non-verbal communication, which would seem logical because I’m blind. I mean speech too. I am usually verbal, but lose my ability to speak coherently (or sometimes at all) under stress.

5. I have serious sensory issues. For instance, I find certain sounds incredibly overwhelming. I also seem to have sensory discrimination issues, like with understanding speech in a crowded environment. The worst bit about my sensory issues is that I don’t always notice which is bothering me. For example, I may be hungry but not notice it because there’s a radio in the background that catches my attention.

6. I have slight motor skills deficits. Whether these are diagnosable as anything, I do not know. People on social media often urge me to seek a diagnosis, as my parents either weren’t given a diagnosis or don’t care. However, I find this incredibly stressful and difficult.

Just today, I considered buying myself a white walking stick. They’re sold at assistive equipment stores for the blind. I after all usually use my white cane more as a walking stick and the white walking stick would still signal people to my blindness. However, as much as I seem comfortable invading Internet spaces for mobility-impaired people, I don’t feel so comfortable getting assistive devices for this reason.

7. I am blind, but I still can see a tiny bit. I have light perception only according to eye tests. This’d ordinarily mean I’m functionally totally blind and I usualy say I am. However, I can see such things as where windows or open doors are located. This sometimes confuses people, but in reality, most people who say they’re blind have a tiny bit of vision.

8. I exhibit challenging behavior. This is not willful misbehavior. Rather, it is a response to overload or frustration. I am learning better coping skills.

9. I am more than my disabilities. I have summed up most of my recognized challenges in the above points, but like every human being, I have my strengths and weaknesses.

10. I don’t have special needs. I just have needs. I mean no offense to the special needs parenting community, as I know they don’t mean to offend me. My point however is that, if we see the needs of disabled people as somehow more “special” than those ordinary needs that non-disabled people have, we may forget that not all our needs are explainable by disabilities and we don’t need to have a recognized disablity to justify our needs. We’re all human, after all.

This week’s spin cycle prompt is to write about your Halloween. Since we don’t celebrate Halloween much here in the Netherlands, and I certainly didn’t do anything for it this year, I have a hard time telling you about my Halloween specifically. We do have a similar celebration though, St. Martin, which is celebrated on NOvember 11. On St. Martin, kids go from door to door as on Halloween, only they carry a lantern and aren’t dressed up. They sing a St. Martin’s song and then get a treat.

I did follow a lot of Halloween-related posts over the past few weeks, and one was a Halloween-based social story (unfortunately, I forgot where I found it). For those not familiar with them, social stories are like little tales you tell kids with social-cognitive difficulties such as autism so that they know what to expect and how to behave in certain situations. They often include both written “instructions” and pictures. Reading this social story reminded me of my own most embarrassing St. Martin’s experience, when I could most definitely have used a social story.

I was about thirteen, which I think is way old for trick-or-treating, but my classmates were still going too and so was my younger sister. None of my classmates lived in my neihgborhood and my sister didn’t want me to go with her and her friends. I went alone, which was hard enough given that I’m blind and couldn’t always find the doorbell. However, the embarrassing thing was that, though I did start going from door to door at the same time my sister did, being alone, I had no clue when to return home. So at one point I had been trick-or-treating for I don’t know how long and I rang the umpteenth doorbell, and someone told me that I was way late and should be home by now. That sure was embarrassing!

Most Halloween-based social stories are catered towards younger children who can’t go from door to door independently, so they include stuff like “I will hold Mommy’s hand”. I realize however that for special needs kids especially, it may still be good to participate in Halloween or similar festivities when they’re older. Here is a St. Martin’s social story for those old enough to walk the neighborhood independently. You can modify the traditions and date to make it Halloween-based.

It is November 11, which is St. Martin. On St. Martin, kids go from door to door singing a song in exchange for candy. After dinner at 6:45, I get my lantern and get ready to go from door to door. I go outside at 7:00 and make sure to take my lantern and a bag for the candy I’ll get. I ring the neighbors’ doorbells. When they open the door, I show my lantern and sing one of the St. Martin’s songs I’ve been taught. Then the neighbors give me candy. I go to the neighbors in my own street only and finish off no later than 7:30. I am home no later than 7:45. I get to choose and eat one piece of candy tonight. St. Martin sure is a treat-filled celebration!

On the Preemie Babies 101 blog, Laura Maikata wrote an interesting post on surviving the post-NICU roller coaster for parents of preemies. Indeed, premature birth affects children long beyond the NICU, sometimes lifelong. Getting a new diagnosis, facing a new issue for your child is hard. So is the sometimes long time that passes between you as the parent noticing something and getting the answers to whether it’s an issue to be worried about and if so, what the diagnosis is.

It is important at all stages of life as a preemie parent to get support. When your baby is still in neonatal intensive care, this is seen as obvious, but there is little support out there for parents of older preemies. There is the PREEMIE-CHILD E-mail list and accompanying website, but that’s about it.

I wrote a comment on Laura’s post on the importance of support from people further along on their journey. This includes parents of older children with your child’s diagnosis or parents of older preemies, but I wanted to make clear it includes adults with special needs or former preemie adults too.>/P>

As a former preemie and adult with disabilities, I have found that I have been able to help some parents of special needs or preemie children along their joureny. I am not very knwoledgeable, but i can share my experiences and give parents an idea of what it’s like growing up as a former preemie. I can also share, if I know it, what helped me overcome certain struggles that parents are now facing with their children.

On the other hand, I too have been able to gain support from parents of special needs or preemie children. They have the benefit of their child’s doctors and specialists knowing the latest research on their conditions, and strategies that work for a child with my condition, may also work for me.

I remember in 2003 being part of a group for parents of blind children. The group also consisted of a few blind adults. I was the only blind teen on the list I believe. At the time, I was mostly on the receivign end of support, and the parents and blind adults at the time encouraged me to go to blindness rehab (though if they’d known how low the expectations of rehab were, they’d not have liked it). Now that I’m in my late twenties and have gained a fair amount of knowledge on my disabilities, I am not on that particular list anyore, but am on others. I have, for example, joined a group for parents of blind/autistic children, and though I was more capable growing up than many of these children are, I can still help in some ways.

There is often an attitude in the autism community that adults with autism cannot speak on behalf of children with autism. I understand, if for no other reason then because parents are the legal spokespeople for children autistic or not. But I don’t understand that autistic adults cannot provide any sort of perspective for parents of autistic kids. I think both parents and adults can learn from each other, and it isn’t that one group should speak for the other.

Good Friday has a special place in the mind of Brielle’s Mom, blogger at Brielle and Me, because it was the day she first became aware that something wasn’t normal about Brielle. I do not know when my parents became aware of my blindness, or whether there was a specific event that caused them to worry. I do know they, like Brielle’s parents, knew I was at risk, because they kept warning the NICU nurses not to turn up the oxygen.

With regard to my other disabilities, my parents knew about them for years before I was diagnosed. Like, when I was first diagnosed with autis, my parents told the doctor that they’d suspected it since I was two-years-old. That was eighteen years ago at the time.

I do not remeber becoming aware of my blindness at a specific moment, but with the autism, there is a specific moment which caused me to start to wonder. It was June 16, 2002, 3:50 AM. I was in my rooom, the volume of my CD player turned up, writing in my journal. On June 17, I was expected to disclose a very personal struggle of mine to my high school tutor. I had not been able to speak out of anxiety the previous Friday, and he had me come in on MOnday to write down what was going on, what caused me to fail five subjects in ninth grade because of mostly lack of effort. The reason I struggled was my becoming increasingly aware of the fact that I was never going to be seen as “normal”, and that I had to compensate for my blindness in some way. I also started becoming aware of my alters that year, but I didn’t disclose this to my tutor that Monday, or ever until several years later when he read my online journal.

Back to Sunday June 16. My father came into my room shouting. I don’t know until now, and never knew, what made his angry: the loud music, the fact that I was still awake, or what. “Are you autistic or somehting?!” he shouted. I knew better than I know now why he was saying that I was autistic, believing at the time that antisocial behavior like turning up the music in the middle of the night, is typically autistic. It wasn’t the first tiem or the last that my parents labeled me autistic or any number of other neurodiverse conditions or mental illnesses. It was the one time that the message got through. Not that I shouldn’t be up late or play loud music, but that something wasn’t normal about me. I suspect neurotypical teens sometimes play loud music at night too, so in this sense I do not know what made the comment get through to me this time. There were far more typcal signs that my parents commented on: my stimming, my meltdowns my social withdrawal and bizarre behaviors, etc. But this time, I believed my father.

I was obsessed with autism for the next nearly two years, until again it was my father who pulled me out of it. I didn’t want anything to do with autism for the next two and a half years, until my staff at the independence training home decided I needed an evaluation. I was given the diagnosis of autism on March 16, 2007.

If you have a disability, is there any specific event that made you aware of it? If you have a special needs child, when did you first realize they weren’t developing typically?